My journey to becoming a Patient Governor

Editor’s note: The following blog shows the progress one patient, CreakyJoints, and the ACR have made since 2014 to become more involved in patient-centered education and research. In 2017, CreakyJoints was the Designated Reporter for the American College of Rheumatology Conference in San Diego, broadcasting patient voices and concerns as key stakeholders in helping advance research in rheumatology from the patient floor (https://creakyjoints.org/education/acr-2017-livestreams/). CreakyJoints applauds Kristine Carandang for her advocacy, research and genuine concern for other patients. We look forward to working with her to educate and activate arthritis patients, and promote patient-reported outcomes through ArthritisPower.

In 2014, I attended my first American College of Rheumatology conference. Taking my first steps into the Exposition Hall, I was amazed at the potential: hundreds of booths with the most up-to-date knowledge and resources all about one person, the patient with a rheumatic disease. I walked up to my first booth, a pharma company of the newest drug I had been prescribed and asked for information.

The representative happily greeted me with a question, “Are you a healthcare provider or researcher?”

Pausing for a moment, I stumbled out my answer, “Um, well, I’m asking as a patient.”

The representative’s smile diminished and his eyes shifted to the ground. He replied “Oh, we are not allowed to give this information to patients.” He quickly redirected me to a stand of patient handouts in the next booth over.

After skimming a few handouts, which turned out to be too basic and quite unhelpful, I looked up at the Exposition Hall with a new pair of eyes. There are 350 million people in the world diagnosed with arthritis, yet in this room, there were very few people claiming their own rheumatic conditions. Although this gold mine of knowledge was about the patient, it was not for the patient. I quickly changed my answers to booth representatives to that which was also true – “I am both a healthcare provider and researcher; please provide me with all the info you have.”

Looking back, this was the first moment I was asked to forego my identity as a patient in order to prove myself worthy of a seat at the healthcare table. The exclusion of patients is not a fault of the American College of Rheumatology which, by definition, “represents rheumatologists and rheumatology health professionals around the world,” but of conventional healthcare research in general. As a PhD candidate conducting research on rheumatic conditions, the integrity and validity of my research data have been questioned because of the fact that I am diagnosed with rheumatoid arthritis. Science espouses objectivity so there’s a concern that my perspective as a patient may bias my research work. At times, I have been advised to table my personal experiences and have even been encouraged to pursue a different line of research all together. Through all of this, I share the same sentiment as my fellow patient advocate and PhD colleague Jen Horonjeff who said, “While I don’t really care to be called a doctor, it’s the principle that being seen as a patient disqualifies you from being seen as anything else (especially not an intellectual equal).”

Luckily, at the same conference, I ran into Dr. Ben Nowell who introduced me to CreakyJoints, a group of patients like me who want support, information, empowerment, and change. He told me about a new research project called ArthritisPower, which would be overseen by a group of patient governors who not only were a part of the research, but who would help guide the research! Fueled by this idea, I have changed my own approach to my research and to claiming my identity. I surround myself with patient organizations that champion patient engagement. I have open discussions with supportive research mentors, including my dissertation chair, who urge me to capitalize on my unique perspectives. Finally, as a new patient governor with ArthritisPower, I no longer hide my diagnosis, but instead proudly claim the reason why I became a researcher in the first place: to help people like me. My trials, successes, and experiences as a patient are my number one asset to contributing to rheumatology research. It is only when patients have a seat at the research table can real change happen. Research is only valid when patients’ eyes can review it and patients’ voices can help interpret what it means for others like themselves.